Background
Involving people in decisions about their care and treatment can improve outcomes and experiences for patients, and potentially yield efficiency savings for the health system through increased prevention and supported self-care. NHS England has made a commitment to become much better at involving patients (and their carers) by giving them the power to manage their own health and make informed decisions about their care and treatment. The national patient experience surveys ask service users if they feel involved in decisions about their care.
A number of national patient surveys ask service users whether they were involved as much as they wanted to be in decisions about their care and treatment. It is useful to compare people's responses to understand how experience varies across NHS services.
Cancer Patient Experience Survey respondents were asked if they were involved as much as they wanted to be in decisions about their care and treatment. They responded the most favourably, with 81% of respondents stating that they were ‘definitely’ involved in decisions, and only 2.5% saying that they were not. By contrast, only 52% of Community Mental Health Survey respondents said that they were ‘definitely’ involved as much as they wanted to be in agreeing what care they would receive, and 8% said they were not involved but that they wanted to be.
78% of Maternity Survey respondents stated that they were ‘definitely’ involved in decisions about their care during labour and birth. Seven out of 10 Children and Young People's Survey respondents (parents with children aged 15 and under who had been admitted to hospital) reported that staff ‘definitely’ involved them in decisions about their child's care and treatment. 63% of Urgent and Emergency Care Survey respondents, 61% of GP Patient Survey respondents and 55% of Adult Inpatient Survey respondents stated that they were ‘definitely’ involved as much as they wanted to be in decisions about their care and treatment. One in 10 Adult Inpatient Survey respondents and Emergency Department Survey respondents said that they were not involved as much as they wanted to be.
The differences in responses between the surveys may reflect the demographics of respondents, as well as their experience of services. For example, older people tend to respond more positively in surveys, and a higher proportion of inpatients are in older age groups compared with community mental health service users. Additionally, while the most recent results for each survey are presented here, they were carried out in different time periods.
Since 2018, GP Patient Survey respondents have been asked “During your last general practice appointment, were you involved as much as you wanted to be in decisions about your care and treatment?”. Between 2018 and 2021, the proportion of patients who were ‘definitely’ involved as much as they wanted to be in decisions about their care and treatment remained constant at 61%. In 2021, 7% of respondents were not involved as much as they wanted to be.
Until 2019, Adult Inpatient Survey respondents were asked, “Were you involved as much as you wanted to be in decisions about your care and treatment?”. The proportion of respondents who said they were ‘definitely’ or ‘to some extent’ involved as much as they wanted to be remained at around 89% between 2009 and 2019. Those who were ‘definitely’ involved as much as they wanted to be increased over time, from 51% in 2009 to 55% in 2019. This was offset by a decrease in the proportion of respondents who said they were involved ‘to some extent’, from 38% to 35%. There was almost no change over time in the percentage of respondents who said they were not involved as much as they wanted to be.
In 2020, respondents were asked, “To what extent did staff looking after you involve you in decisions about your care and treatment?”. 37% said they were involved ‘a great deal’, 44% said they were involved ‘a fair amount’, but 5% said they were ‘not at all’ involved in decisions about their care and treatment.
Since 2014, Community Mental Health Survey respondents have been asked, "Were you involved as much as you wanted to be in agreeing what care you will receive?". Between 2014 and 2021, the proportion of respondents who answered, ‘No, but I wanted to be’ increased from 6% to 8%. Meanwhile, the proportion who ‘definitely’ were involved as much as they wanted to be decreased from 56% to 52%.
The Organisation for Economic Co-operation and Development (OECD) found that UK patients were more likely than average to report that their regular doctor involved them in decisions about care or treatment, but this declined from 91% in 2010 to 89% in 2016. In 2016, patients in the Netherlands were the most likely to report that their regular doctor involved them in decisions about care or treatment (91%), while patients in Sweden were the least likely (81%).
About this data
These indicators draw on data from the Adult Inpatient Survey, the GP Patient Survey, the Children and Young People's Survey, the Urgent and Emergency Care Survey, the Maternity Services Survey, the Community Mental Health Survey and the Cancer Patient Experience Survey.
For each Care Quality Commission survey, two weights have been applied to the survey results data:
- a trust weight to ensure that each trust contributes equally to the England average, and
- a population weight, to make sure each trust’s results are representative of their own sample and do not over-represent particular groups, such as older respondents.
A combination of the two weights results in one single weighting, which has been applied to enable comparisons between years.
Note that data from the most recent survey publications have been used for comparison. Our comparison across NHS services does not adjust for differences in survey populations; therefore, the results may not be directly comparable.
For the 2020 Adult Inpatient Survey, patients aged 16 and over were eligible to take part if they were treated in hospital during November 2020. Fieldwork (the time during which questionnaires are sent out and returned) took place between January 2021 and May 2021. Participants were offered the choice of responding online or via paper-based questionnaires for the first time, and questions, terminology and methodology used in the survey were updated. Therefore, the 2020 survey results are not comparable with previous years.
Fieldwork for the 2021 GP Patient Survey took place between 4 January and 6 April 2021. In 2020, fieldwork took place between 2 January and 6 April 2020. This means that some responses were collected after the Covid-19 pandemic began in England. Analysis was conducted to understand whether the pandemic had an impact on results. The analysis found that, as only 1.2% of responses were received after lockdown measures were implemented, the results of the survey and validity of comparisons with previous surveys were not impacted by the pandemic.
For the 2021 Community Mental Health Survey, people were eligible if they received treatment for a mental health condition between September 2020 and November 2020. Fieldwork took place between February 2021 and June 2021. Some questions asked participants to reflect on their care over the last 12 months, thus reflecting experiences of care throughout the pandemic.
For more information, please see NHS England, National Patient and Staff Surveys.
Definitions and comparability for the international indicator are taken directly from the OECD report Health at a Glance 2019: OECD indicators. Detailed information about the definitions and the source and methods for each country can be found here.
